March 20, 2014 at 7:52 PM (Uncategorized) (, , , )

so. its high school. My friends and I are sitting around at my house debating what to do that night it was a group of at least four people and probably more.

My best friend at the time came up with an idea, “Let’s  go roller skating!”

I raised my hand and said rather sarcastically, “Hello,  I can’t do that,” and she got this look and burst out laughing, “Oh my gosh, I forgot! I forgot you couldn’t do that!” They hadn’t made me invisible or forgotten I was there, they had simply forgotten my disability for a moment. we went off to do something I could do and I appreciated that very much.

my best friend of those days and I aren’t speaking anymore and that’s a good thing for me for reasons that have nothing to do with this post.but I want to give her credit for having a very involved idea and a very young age that disability is something to be included not excluded.

the only thing I feel bad about looking back to those days since I’m much much older now is this:  Did my group of friends  miss out on things they would have rather done that were more physically involving like sports  or going hiking in a park because I couldn’t do those things? I wonder about that because I didn’t have the self will at the time to ask them did you ever get to do those other things the roller skating the hiking perhaps at a different day and time when I wasn’t around or I wasn’t interested so that you could go do them and not miss out.  I hope so. Because during those days, everyone should get to do the things they want to do.

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Thank God for Twitter. No, I really mean it.

November 16, 2013 at 3:58 PM (Uncategorized) (, , , , , )

Not since I began blogging in 2005 have I had as much fun following and manic link-chasing a number of folks I read under the hashtag #solidarityisfortheablebodied.  They talk about their experiences, that vary widely.

Someone was touched without their permission…and I nod in agreement.  That’s happened to me.

Someone had their symptoms minimized and tossed off by a doctor….I nod in agreement. That’s happened to me.

There is an elevator in the building…3.2 light years from my office cubicle…and again, I nod in agreement….and on and on and on.


It is heartening to know that all these nutty things have happened to so many of us at the hands of the able bodied…that we are not alone.

And sly Lawrence Carter Long…he isn’t afraid to call the emphasis on people first language a “cult” when it gets so overdone that taking the time to explain it and build it out and use it…is   the oppression of time lost better spent calling out ableds and others that are Doing Things Wrong.

I want to make clear I think shooting for people first language is a good thing…but even that shouldn’t get in the way of the actual work:

And for a few tweeters I found dissing the hashtag:


Okay.  Let me boil this down for you…so there is no mistaking why people are crying out when these things happen:

R E S P E C T.   Sing it Aretha.  We aren’t getting enough, and by God, we want some now.

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Answering the Neanderthal, Knuckledragging Witch’s Pink Letter

August 22, 2013 at 11:44 AM (Uncategorized) (, , , , , , , )

Pink Letter  For those unaware, the family of a teen with severe autism got a letter telling them they were unwelcome in the neighborhood because of some effects of his disease, and in fact had no right to live in such a neighborhood, that in fact parts of his body should be donated to science and that the family should move or kill their child for the comfort of the writer of the letter to the left, signed “One Pissed off Mother.”  Here is my cleaned up no-cursewords response.

To “one pissed off mother.”

You do realize, don’t you ma’am that you and your children are one car accident away from possible quadriplegia?  One stroke away from similar debilitating physical changes, and/or cognitive deficits?  That you could be the mother of a child with disabilities as soon as tomorrow?

Young Max does the best he can with his autism.  Just as, I’m sure, your lovely children do the best they can without it.

Would you expect something so completely foul to be slipped under your door, should the symptoms of any complex impairment you  or your children might acquire become noticeable to the wider world?  Would you expect that your neighbor might suddenly declare you unwelcome?  Would you be pleased to comply if someone said the following about your child, if the child became disabled?

“Personally, they should take whatever non retarded [sic] body parts he possesses and donate it to science. What the hell else good is he to anyone!!!” the letter reads. “Do the right thing and move or euthanize him!! Either way we are ALL better off!!!”

I think not.  I think you would hope for the kind of support the rest of the neighborhood is giving Max  and his family right now, since you put that hateful excuse for communication under their door.

I’m not ashamed to say, I hope you are found.  I hope you are outed and have to answer for every single word of this offensive letter *in public* in front of Max’s family.

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Falling short

May 8, 2013 at 11:09 AM (Uncategorized) (, )

I am falling short.  I am no longer that connected clued in voice about things disability on the internet….nor can I hold myself up proudly anymore as an example of the Social Model of Disability, the idea that discrimination gets us more than the disability does.

I’m going to say something rather gauche, as regards disability rights, that will offend those who still fight the good fight on the internets on a nearly daily basis.

Why haven’t you seen me much?

Because the effects of

Cerebral Palsy, gut disease, asthma, carpal tunnel, bilateral lymphedema and oh, yeah depression…

It’s too many.  I can’t toss off and be cool like some of the activists I’ve met.

Because the physical, mental, financial and bureaucratic sides of this **** have begun to overcome my ability to cope.  I am made silent by the conditions themselves, the four hours of daily intrusion that I have to have in order to keep on living…the hour and a half after that that I am medically advised just to lay around with my legs up…that’s six and a half hours, close to a damn job…

I can no longer sing in groups because I cannot rehearse for the length of time needed. After about forty five minutes the throat closes up…and this was the straw that began to break the back.  I used to need to sing like I need to breathe.  Not permitted now.

I used to have ideas pouring out of the keyboard.  Now my head is filled with dosages, transport logistics, supplements, paperwork, arguing with social service and medical persons of various sorts.

I’m now a great bore, because this is all that’s in my head.

I filed bankruptcy in January.  My maternal parent opined that that had to have been “harrowing.”


Apparently I’m in great danger of losing my Medicaid.  I still have Medicare, but Medicaid was often the only one that would reimburse for certain services.  That means no more vision coverage, no more medical transportation payments (crippling as far as seeing physicians  because there is no transit in my county )  I cannot use the pump I just received because the skilled nursing care required for it’s daily usage is not covered under my remaining Medicare.  Sad.  The lymphedema pump was working.   Twenty percent of any outpatient medical expense will now be my responsibility.  I don’t make enough to have that happen.

No more home health aide services means the skin on my legs will break down sooner and my condition will worsen.

My prescriptions will now cost money and my income will decrease by at least 100.00

And if I get to keep it, *if* I get to keep it…the only way to make my excess income non countable is to lose control of my finances altogether in a Medicaid special needs trust….or, in addition to losing that control…be *required* to lose my apartment and go into a facility. (self settled trusts require that second piece )

I’m appealing…and I have contacted Ohio Legal Aid…they will likely represent or go with me to my state hearing.

All this with a minimal support system.

Twenty years ago, I managed to handle stuff like this and just carry on.

It’s not possible to do that anymore.

Younger folk in the disability rights business might see this as old school Medical Model of Disability Whining.   My only warning to them is:  If you are dealing with impairment *never assume* that the ones you have now will remain your only ones.   I used to recognize that and try to guard against it….but I simply don’t have the resources to tell the lie anymore.  The lie that my life is simply a list of different ways of handling daily living and not much different from any able person’s.   The lie that it’s never about the medical side.  The lie that I really can handle running this circus on my own.  I’m quite sorry that I’ve taken off my Informed Crip running shoes.  Really.  Someone else will have to wear them.



























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Blanket statement

November 2, 2012 at 10:46 PM (Uncategorized) (, , , , , )

It was the dress rehearsal for this, really.

In 1983 I was doing a short internship writing for my college paper.  I was doing this during a non-standard time between Thanksgiving and Christmas when most other students were gone.

Well, some bright person whose job it was to manage the heat source in my rambling century old dorm (steam heat) simply turned off the heat after fall quarter finals, not remembering that there were a group of us studying.  Although we still had power, there was suddenly no heat.  In Ohio.  In early December.

When I went in to the shower room each morning, I could see my breath.  I would have been frozen out, except for the blankets.

I can’t take credit for the giant stack of quilts and blankets in the lowest drawer of  a dorm room dresser.  My usual roommate was home that term, but, blessedly, she had left this stack of quilts behind.  It felt like I used all of them when I slept.  I think I did.

It’s a really weird feeling to realize that you have continued to shiver all night while sleeping.

Well, its fall, not winter.  I’m in Ohio again.  Much less mobile, physically able to handle these things.  The edge of Sandy mixed with local lake effect brewing meant that parts of the suburb where I live now lost power and heat on Monday and did not get it back until last night.

But I didn’t want to leave.   The accessible shower…and bathroom, and low bed meant more than light and heat.

It’s troubling that such a vulnerable population as the tenants here had no generator, no auxiliary source of power…unlike an assisted living place five minutes away (their generator eventually malfunctioned, leaving them in the same pickle. ) Two main streets in town had power poles, as well as trees strewn across the streets.  Our wind was only fifteen miles per hour less than the speed on the East Coast on Monday night.

To be fair…the staff did much more checking and follow up this year than during a similar outage in 2011.  They checked on us often, volunteers came with food…

I am planning on writing a missive to town leadership that if the power grid doesn’t allow for “prioritizing” our sort of building, it bloody well should.   In addition, perhaps some cost sharing between tenants, and management and government resources could be worked out so that individuals could have generators, or the building could.

stayed here on Monday and Tuesday and Wednesday…I reasoned, I couldn’t see my breath yet and had enough blankets, so…I should suck it up.  But I did experience the nightlong shivers again…

And I managed to get through the entire Lord of the Rings Trilogy, reading by the window during daylight…in two days.

By Wednesday Night my home health aide was making noises that I *had* to leave, so I spent time at my parents’ home until power was restored.

And all of that is nothing compared to what this guy is going through in NYC. It’s not referenced in the blog, but he’s been hit by bureaucratic and power issues trying to make sure his vent is powered up.

My thoughts have been, and continue to be with all persons with disabilities placed at risk by Sandy….

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